Epilepsy South Africa
456 members150 posts

At a complete loss!

This is my first time posting on ANY forum. I desperately need some advice.

I am 31yrs old and was diagnosed with TLE in my teens. I have a son of 5 years and I feel I cannot cope. My family does not understand my epilepsy and no matter how much I try to explain to them what I am going through, I hit a brick wall. I am battling to keep with life and I feel completely helpless. I am so alone in this and feel like the world just does not understand what I go through on a daily basis.

My TLE affects my moods and my sense of logic goes when it starts playing up.. My jaw locks and my head spins out of control. I started with Neurontin recently and I have to keep increasing my dose as it wears off quickly. How can I get people t understand without driving myself mad??

3 Replies

If TLE is what I think it is, I could tell you a lot about myself. But, "sad but true" I had to learn the hard way "silence is golden"


TLE. ... my daughter has tle. I fought doctors until we found the correct diagnosis. It was long and hard. People have no understanding of what tle is. If people don't see you drop on the floor and shake, then they don't believe there is anything wrong.

I must say that not even my daughter totally understands that she looses her sense of logic when or that her moods are extremely extreme.

Thing is, you have to accept that you will be okay and so what if others don't understand. As long as you understand, get enough sleep and exercise, you will start learning to cope.


Hi what's TLE. My daughter has two or three episodes of extreme anger tantrums coupled with hearing voices. Doctors are treating her for epilepsy but no joy yet.


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